Four weeks post-op

A quick update from my last post in July. Did Craig and I make it NYC for my brain scan? We came close! We were visiting my family in MA at the time, prepared for our first overnight from Ryan. We drove to the airport, we boarded the plane, we sat on the plane for two hours, the flight got cancelled due to extreme weather, we got off the plane, we drove home. Hah. So we are still working on that. 

Also, I don't have any real update on my stem cells. We're hoping Dr. Centeno's clinic in Grand Cayman will be able to reopen in the spring and we'll finally get down there for re-injection. 

Now jump ahead. This week, I'll be four weeks post-op. You didn't think I would make it a whole year without going under the knife, did you?

After our trip to San Francisco in early October to see Dr. Peled, I decided it was worth trying a third occipital nerve surgery. This time, Dr. Peled would be targeting both my right and left lesser occipital nerves. If you're keeping track, he had already decompressed both during my first surgery with him in 2017 and had gone back in to cut the left during my second surgery a few months later. My decision to move forward with this latest procedure was based on the temporary (diagnostic) relief from the nerve blocks he performed this fall. But why hasn't this relief I seem to get from the blocks translated to lasting relief from previous nerve resections and excisions? A valid question.

As I mentioned in my last post, Dr. Peled had explained to Craig and I that there was a small but entirely plausible chance (something he sees in about 10% of patients) that I could have an aberrant lesser occipital nerve branch located next to my trapezius muscle (instead of behind the sternocleidomastoid, where it's traditionally found). Nothing is a guarantee, of course, and I can understand how the thought of a somewhat exploratory surgery seems....aggressive? But the reality is, until you are living and breathing this pain every waking and sleeping moment of your life for over a decade, you just can't fully appreciate what I would do to feel relief. Before every surgery or procedure I've had, I'm inevitably met with reactions from friends and family that go something like this: "Oh I'm so sorry you need another surgery." I understand the knee jerk sentiment, but please don't ever be sympathetic toward's someone's hope. Just say whatever you think you could that can give them more of it. 

Between COVID and a toddler at home, traveling for medical procedures is a little extra challenging these days, but thanks to my mom, Ryan was in the best hands while we Craig and I were in California. Now, almost a month later, she tells us on a daily basis "I missed you when you were in San Francisco." Cue heart melting. 

Anyway, our trip was short as we could make up. Out on a Tuesday, pre-op on a Wednesday, surgery on Thursday, post-op on Friday and straight to the airport home. 

Surgery took a couple of hours but I came out of it relatively comfortable, as is typically the case. Prescriptions filled as always but no meds needed to control surgical pain. And most importantly, we were so relieved to hear that Dr. Peled had indeed found (and cut) those aberrant branches on both the left and right sides. 

It's an incredibly validating feeling to know there was some clear damage to those nerves. Now we just wait, heal, and pray to every higher power that a reduction in pain will follow. Recovery from these surgeries can be a bit of a rollercoaster. Everyone is different, of course, but it's not uncommon to experience a "honeymoon phase" in the first few days post-op, as everything is pretty numb. Then the nerves start waking up and surrounding nerves tend to get a little angry, going to into overdrive to take over the job of their compromised neighbors. This phase can last weeks (sometimes months) but Dr. Peled has reminded me that the 3-6 month period is generally when the most lasting relief is felt. Patience, patience, patience. 

Here's a look at my incisions the morning after surgery. 

So how's my recovery going? Well, see above. I'm optimistic (I have to be) but this last month has been really challenging...no way around that. The actual spots where the nerves were cut feel decent, but pain at the base of my skull, over the top of my head, deep into my temples, over my eyes, and across my forehead has just been so intense and unrelenting. At times, unbearable. Then again, what does unbearable even mean when not bearing it is simply not an option.  

I have to take it easy from working out for at least another couple of weeks, but in the meantime I'm able to continue my daily walks and have gotten back into my early morning cold plunges in an attempt to help regulate my nervous system. 

I've been trying to get into a more consistent breathing exercises routine too, but it doesn't come easy to me. The voice I'm following along to is telling me to focus on my inhale and exhale. To be present in the moment. That this moment you're in is all you have. That worrying about the pasts breeds depression, that worrying about the future breeds anxiety. I get all of that. But what if it's present moment that is suffocating me? When it's 1:15 on a Wednesday afternoon and I'm feeling absolutely suffocated by the physical pain I'm in. Where does that leave me?

Every single night when we're getting into bed, Craig asks me "Can I get you anything?" He means it too. My head is usually already "tucked in" with its ice packs so I tell him no, thank you, that I'm okay. But a few nights ago, before he could finish the second half - "Wake me up if you need anything" - my eyes swelled with tears. Oh boy, here we go. They fall hard and fast. There is nothing you or anyone else can get me right now and that's why this is so hard. Imagine falling asleep drenched in pain that is taking your breath away. Hoping with every ounce of your being that something in your body shifts overnight so that tomorrow can start differently, and then crushed when you wake up and realize it hasn't. Day after day after day after day.

That's a glimpse into this reality that I've always hated sharing because I never want it to detract from my optimism. Not for you, but for me. In the thick of this pain, I know that the voice inside my own head matters, which is why I force myself to keep looking forward. But hope and suffering are not mutually exclusive. On especially hard days, my undeniably empathic two-year old looks at me, tilts her head, and asks with concern in her sweet little voice "Mom, you feelin' good?" She already recognizes the look in my eyes, the strain in my voice, the rubbing of my temples. And holy shit does that break my heart. I imagined one day talking to Ryan about Mommy's head but never in a million years did I think it would be so soon. But I try to appreciate the compassion and resilience it's teaching her as much as I appreciate the love and light she shines on my darkest moments. 

And let's face it, if I'm not feeling good, how am I ever going to keep keep up with this?

Fingers crossed I'll have some good news to report in the coming months.

An old C2 fracture, more procedures, nTOS consult

Ready, set, update. 

It's been a busy and hard few months working on this head of mine. Pain hasn't let up. Excruciating hours turn into days turn into weeks turn into new baseline levels of pain. And all the while, life goes on. All the good parts shine through (sometimes even brighter). But the sheer agony of chronic pain; all the fear, anxiety, and hopelessness it carries...it takes no days off. It's all-consuming yet for me entirely invisible to you. It is suffocating and overwhelming and terrifying in a way I can't fully explain. So I keep searching for answers because, well, there really is no other option. 

So here we go.

Treatment update 

In my last post, I recapped the treatments I'd been undergoing in the last six months or so.  I stopped Shockwave soon after that, as we weren't able to recreate or even come close to the soft tissue changes it seemed elicit back in January. Similarly, after about six weeks of daily use, it was apparent that the Light Stim red light therapy bed also was not having any impact on my pain levels. If anything, it seemed to exacerbate my symptoms, which makes very little sense but also isn't entirely surprising based on the response I've had to other laser treatments in the past. 

Per the last recommendation from my neurologist, Dr. Dodick,  I mentioned trying a course of N-acetylcysteine (NAC), which is a precursor molecule to the body's main antioxidant, glutathione, and has been studied in traumatic brain injury patients for its neuroprotective and mitochondrial-boosting benefits. Along the same lines, I underwent three NAD+ infusions with my naturopath this spring. NAD+ (or nictotinamide adenine dinucleotide) is what fuels metabolic reactions and is used therapeutically to to treat a variety of age-related, inflammatory, autoimmune, and neurologic conditions. Unfortunately, I didn't experience benefit from any of it. 

A fractured C2?

I also mentioned that my current pain doctor, Dr. O'Connor, had referred me to a new neurosurgeon, Dr. Hamid, just to get a fresh perspective as we continue plowing through what's left of interventional pain management procedures. Was there some other big piece of the puzzle we were still missing? I had a new head and neck MRI prior to this appointment just to ensure we had the most up-to-date information. Dr. Hamid agreed with Dr. Dodick's Complex Regional Pain Syndrome diagnosis, especially after seeing photos of some of the red spots on the back of my neck (see last post). And here's a more recent one below.

But he also pointed out something really interesting: an old fracture at C2. Of course we can't prove it to be true, but given that my whiplash bike accident was the event that started this all, causing severe ligament damage and instability at C1/C2, we have to assume that I did indeed break my vertebrae when I hit that tree. You can see the lighter line that runs horizontally across the top of my second cervical vertebrae, in between the arrows. It blows my aching mind beyond belief... of all the expert eyes that have seen this imaging over the last 10 years, not a single doctor or radiology report has identified the fracture. How is that even possible?

The good news is that the fracture has healed well so he doesn't think it's causing any issue, but interesting to note nonetheless. And other than that, he didn't really have other insights or recommendations, aside from an implanted neurostimulator. I think I've written about these before, probably before my occipital nerve surgeries. Essentially, this consists of a neurostimulator device implanted under the skin with wire leads that deliver electrical pulses to the epidural space near the spine. You control the impulses with a handheld device, with the goal of controlling pain by disrupting the pain signals that travel between the spinal cord and brain.  

I've learned to never say never, and if you've been around here long enough, it's fairly obvious that I'll cut open any part of my body wide open if there's a chance it could help my head. But, from the research I've done and the experiences I've had with nerve stimulation, I'm just not convinced right now that this is the right path to pursue. 

More therapies and procedures 

Back in April, Craig and I consulted with a physical therapist, Dr. Turner, of Texas Migraine Clinic. We really liked Dr. Turner. His approach to cervicogenic migraines targets the cervical spine at lower levels than most doctors. In his experience, he's found C5/6, C6/7 as primary pain generators. So he led me through a series of simple (and supported) cervical extension movements with the goal of basically "milking" the disc forward to alleviate irritation of nerves traveling up the brainstem. I tried the exercises for a period of time but unfortunately, didn't experience any shift in pain. If anything, my pain spiked. As it does. 

Now on to the interventional procedures I've had with Dr. O'Connor since March. 

The day after my last post, I had an occipital nerve block. This was one of those desperate "let's triple check this just in case" procedures. As I explained before, the only real substantial relief I've ever had from a procedure, whether diagnostic or therapeutic, were my ON blocks with Dr. Peled in San Francisco prior to my first decompression/excision surgery in 2017 (even though the surgery itself did not help). This time around, the blocks provided no relief. But I guess worth trying, right?

On that note, we are planning to fly back to San Francisco this summer to try another round of blocks with Dr. Peled. Craig and I spoke to him a few weeks ago just to pick his brain about all that's going on. We both just can't shake the fact that I responded so well to those injections. 

He recommended a few things: 

First, that I try a scalene block. If there is nerve pain being generated by my brachial plexus, this has some potential to help. If brachial plexus sounds familiar, it's because that's actually one of the spots Dr. Centeno is planning to reinject my stem cells into when we FINALLY are able to get back to Grand Cayman. (Side note update on that: they're hoping for September reopening). I've never had a scalene block before though, so I am (of course) on board to try. 

Next, that we try finding another peripheral nerve target to treat. Dr. Peled explained that in about 10% of patients he operates on, he finds an aberrant lesser occipital nerve branch located next to the trapezius muscle (vs. behind sternocleidomastoid). As a reminder, he decompressed my lesser ON in the first surgery, but there's a chance I could fall into that minority group. I think it's at least worth having him block my lesser ON just to see how I respond. 

Okay, back to Dr. O'Connor. Man, I am really all over the place right now. But my head feels like it's going to absolutely explode right now so I think this is the best we're gonna do. 

Next on tap with Dr. O'Connor was my first stellate ganglion block. The stellate ganglion is a collection of sympathetic nerves found anterior to the neck of the first rib. It provides most of the sympathetic innervation to head, neck, upper extremities, and a portion of the upper thorax. Blocks are often used to diagnose or treat a variety of circulation problems or nerve injuries, including complex regional pain syndrome (CRPS) and different types of neuropathic pain disorders. They're even used to treat PTSD, which is pretty fascinating. 

This was my first nerve block performed face up on the table. The doctor inserts a needle into your neck (on one side of your voice box) and injects a local anesthetic. Then under x-ray guidance, they use a second needle to precisely inject an anesthetic medication. For the rest of the day, it's common to experience things like a temporary droopy eye (which happened after my first) or arm numbness (which happened after my second). The most significant relief should come in a relatively short window following the procedure. 

This Friday, I'll go in for my fourth SG block (first right, then left, right again, and now left). I had a little bit of pain reduction from the first two, more so on the left side, but nada from the third. Ideally, we'd love for the relief to build on itself, but that doesn't really seem to be happening so far. 

Interestingly, when I lay down on the table for my second SG block and Dr. O'Connor instructed me to turn my head to the right, he was pretty taken aback by the rigidity of my sternocleidomastoid. It's all very normal to me because all the muscles of my neck are always so tight, and coupled with compromised mobility from my fusion, tension is just what I'm used to feeling. But it made him think that it may be worth trying to inject some Botox into those SCMs. Most people know it's used for migraines, but Botox is also a common treatment for cervical dystonia, or spasmodic torticollis. It works by preventing nerves from releasing acetylcholine, which prevents your nerves from sending messages to your muscles telling them to contract or spasm. 

I've had Botox injected pretty much everywhere else on my head (aside from the places where wrinkles appear, hah!) so I was immediately on board. Right now, we're just waiting for my insurance to approve it. They like to deny every procedure I have (every. single. one.) which means each one has to go through an appeal process before getting scheduled. If you live in chronic pain, you know the struggle. 

NYC for a Brain Scan 

To continue chasing down any central contribution to my pain (central sensitization/CRPS), Craig and I will be traveling to New York city next week so I can have a qEEG assessment.A few months ago, we were introduced to a neuropsychologist who has worked with many post-concussion/TBI patients/chronic pain patients. The brain mapping that I'll have done will measure electrical activity in different areas of the brain.  From there, neurofeedback can be utilized to up or down-regulate areas of the brain that are over or under-active. We’ll learn a lot more when we’re there about the assessment and interventions that can be used to help normalize anything that's out of balance. So I'll definitely be writing more about that soon.

Thoracic Outlet Syndrome 

Lastly, I wanted to share a little of my appointment yesterday with Dr. Broussard, a thoracic surgeon who specializes in Thoracic Outlet Syndrome (TOS). I haven't talked about TOS before, as it's something I've really only explored recently. If you're not familiar, TOS is a condition involving compression of the nerves or blood vessels that pass through the base of the neck. It's typically characterized by disabling pain in the neck and shoulder, along with pain, numbness, tingling, and weakness in the hands and fingers. This obviously doesn't exactly line up with my condition, but over the last few months, I've developed increasing nerve pain down my left arm. The pain is very much connected to what's going on in my neck and up the left side of my head. As my head pain spikes, the nerve pain also increases. So I started researching a little more. 

There are three types of TOS: Arterial (compression of the axillary-subclavian artery), Venous TOS (compression of the axillary-subclavian vein) and Neurogenic TOS, or nTOS, (compression of the brachial plexus nerves). I learned that whiplash can also be a cause of nTOS (really any injury that results in chronic cervical muscle spasm). So I started to really wonder if there is a compression in my brachial plexus that's driving pain. (And remember Dr. Peled's suggestion to try a scalene block to target the brachial plexus? And Dr. Centeno's plan to inject my stem cells into my brachial plexus?)

So Craig and I went to see this surgeon here in Phoenix, who happens to be a very well-respected surgeon in the TOS world. And he was wonderful. He spent a solid 90 minutes with us, talking through my history (which is, as you can imagine, a bit of a doozy). He walked us through his diagnostic algorithm, explaining that although nTOS is the most common, it's also the hardest to diagnosis. It starts with a clinical diagnosis to determine whether next steps are warranted: first a dynamic CT angiogram to check for compression and anterior scalene hypertrophy, then Botox injections (under guidance) of anterior scalene and pec minor. From there, surgical options are weighed. Surgical treatment of TOS consists of first rib resection to alleviate compression. 

In terms of the headache/TOS connection, Dr. Broussard explained that he does see a connection with occipital headaches, but not as much with pain in the frontal region. On the whole, nTOS symptoms are generally just more distal than central, which was leading him to think it really wasn't an underlying issue for me. I experienced very little reproduction of symptoms during the physical exam (upper extremity tension testing was really the only portion I showed positive signs for), which made him think that additional testing, at least at this time, probably just doesn't make sense. 

I felt a mix of emotions leaving his office. Relief, I guess, to eliminate a diagnosis that doesn't necessarily have the easiest pathway to recovery. But also defeat. It's disheartening to be told (even by the most compassionate of doctors, like Dr. Broussard) that he can't help you. 

But, I'll continue focusing on what's ahead. Hopefully these next few months will bring some new insights and positive treatment outcomes. As Ryan likes to say when she takes a spill on her Strider bike (before I can even ask if she's okay)...

"I get back up." 

Thanks as always for reading! 

Head Update March 2021

Hello friends and strangers. It's been a while, as it always is. But thank you for checking back in, or perhaps landing here for the first time, in your own fight for freedom from chronic head pain. I know these last twelve months have rocked pretty much everyone's worlds in all kinds of unprecedented, unfathomable ways. And if you live with chronic and unrelenting pain, the hill you climb every day is still the hill you climb every day. I'm sure many of you have spent this year climbing it with fewer resources, less treatment, less support, less hope. So even if the answer to your (our) pain still doesn't feel within reach, here's to hoping that it can finally start to feel just a little more possible. 

I figured I'd go through some updates, bullet point style. Spoken like a real, time-starved and just a little bit exhausted toddler mom, am I right? These are in (mostly) chronological order since early December. 

• Stem cells: The February update from Regenexx Grand Cayman is that the island is continuing with a cautious, phased reopening of their borders. The next stage is contingent on first having 90% of persons over the age of 60 vaccinated. Once that objective is achieved and borders are reopened, Dr. Centeno's office will be able to reopen (hopefully later in the year). So, my stem cells are still there, safely sitting in cryopreservation storage. Though I prefer to envision them lounging in the warm sand with little umbrella drinks, waiting patiently for me.

• Z Health: I had mentioned before that I was starting some "neurocentric" rehabilitation with a Z-Health practitioner. After my initial evaluation, I was prescribed a series of vestibular exercises (along with some specific breath work). VOR, or vestibular ocular reflex (think gaze stabilization) is used to retain the eyes, inner ear, and brain to work together after head injuries. I think there's certainly a lot of value in this approach, and I stuck to my daily rehab for about a month or so but honestly wasn't experiencing any change in symptoms. 

• Postoperative pain flare: In early December, I had a septoplasty to correct a deviated septum from an old soccer injury. When I was sixteen, I headed an opponent's head instead of the ball (oops) and quickly watched my beautiful cleats turn from white to red. I drove myself to the ER and cried every time I looked in the rearview mirror because of how crooked my nose looked. Hah! It only needed a surgical manual realignment at the time, but my nasal breathing has never totally recovered. Not a huge deal, but over the years, as I've tried different breathing techniques to help manage my head pain, my compromised nasal passageways had become more glaring. 

If you're not familiar with the benefits, nasal breathing has a few advantages over mouth breathing. Essentially, it allows for more oxygen to get to active tissues, as nasal breathing releases nitric oxide. Nitric oxide is needed to increase CO2 in the blood, which is what releases oxygen. So when you're constantly breathing through your mouth, your body's cells simply aren't getting as much oxygen. And when your body is under a constant state of stress (hi, chronic pain!), you're really just making a tough situation worse. So, I figure now was as good a time as any to have my deviated septum corrected. I may not take things as far as my freak-of-nature husband and go for mountain bike rides or perform versa climber sprints with my mouth closed, but at least I can breathe more easily.

The reason I'm even bothering to bring this up is that I experienced an incredibly severe head pain response to surgery. I felt fine immediately after (as in, normal-high headache) but as the night went on, it began to spike, reaching a really out of control, truly scary level of pain. This seems to be a pattern when my body is undergoing any kind of additional trauma. It happened during my Topomax-induced kidney stone "vacation" to Mass General in 2015 and during my unmedicated labor with Ryan (and to a slightly lesser degree, during a bout with mastitis during my early days of breastfeeding). Unfortunately, pain at this level has been as unresponsive to medication as any level below it. Otherwise, I'd of been in the ER in a heartbeat. 

• Interventional procedures: In my last post, I mentioned that I'd be starting a few rounds of cervical epidurals with Dr. O'Connor at AZ Innovative Pain. This is an injection of a steroidal anti-inflammatory under x-ray guided fluoroscopy into the epidural space that surrounds the nerves at the junction of C7-T1, which then disperses throughout the cervical spine. The initial plan was to do three of these, a few weeks apart. But after zero response to the first two, we decided a third wasn't warranted. So where the heck to go from here? After chatting with Dr. O'Connor last week, we decided to pivot in a different direction: occipital nerve blocks.

If those sound familiar, it's because I've had occipital nerve blocks before (quite a few times actually). In all these years, the only real substantial relief I've ever had (from a diagnostic or therapeutic procedure) was the occipital nerve blocks with Dr. Peled in San Francisco, which confirmed my candidacy for my first occipital nerve surgery in 2017. Granted, I didn't get relief from the surgery itself, a decompression of my left and right greater occipital nerves, decompression of my right and left lesser occipital nerves, and excision of my right and left third occipital nerves. We have no idea why that surgery, and the next one just a few months later - excision of my left lesser occipital nerve - didn't provide lasting relief. All I know is what I felt after the preoperative diagnostic blocks. And out of sheer desperation today, that's what I'm chasing...because what choice do I really have? So I'll head back to the surgery center tomorrow for my first round of ON blocks. We'll see how I respond and go from there.

Dr. O'Connor also just referred me to a local neurosurgeon for a second (or 132nd?) opinion. Given the nature of and complexity of my case, and given that I haven't seen a neurosurgeon since my neurosurgery in FL in 2015, we all agreed this would be a valuable step. I should be seeing Dr. Abdulhamid at Royal Spine Surgery soon.

• CrowdMed:  Earlier this winter, I submitted my case, in all of its exhaustive detail, to CrowdMed. Crowdmed is basically a crowdsourcing tool for complex medical conditions. As the patient, you answer questionnaires that cover your personal story, medical history, current symptoms, etc. and medical detectives with a broad range of expertise can weigh in. One physician agreed that there was likely a central sensitization component to my pain at play (which is probably accurate) but that was really the extent of takeaways. Even though it didn't amount to a whole lot for me, I wanted to share it here because I do think there's a lot of merit to the concept. If you're suffering like me and would do anything for help, you've got to cast as wide a net as possible.

• Brr. Cold water immersion is something I've done periodically over the years, but never on a super consistent or regimented basis. I'd hop in the cold plunge at EXOS after a workout (prior to getting pregnant) or do some contrast therapy here and there, but over the last few months, I've gotten into a solid routine here at home. Why do I put myself through this, you might be wondering? Simply put, cold water immersion is regulation training. You're trying to improve the flexibility of your autonomic nervous system, which is really useful for people who spend the majority of their day in sympathetic-dominant scenarios (chronic pain!). By submerging your body in frigid temperatures, you induce a fight or flight response and your body is forced to react against it. Your breathing normalizes over time (fairly automatically, believe it or not) and it gets easier and easier each time you take the plunge. 

Through the winter, I was able to get away with using our pool, which stays in the high 30s to mid 40s, but as the season shifting and the pool's warming up, I've moved to the homemade cold plunge Craig had installed a few years ago. I go in for just two minutes every morning (you can do anything for two minutes). I'm a super early riser - up by 4:10, workout done by 5:15, out of the moon-lit cold plunge and into the shower by 5:20. I know it seems nuts to a lot of people, but when I wake up each morning already engulfed in pain that gnaws at my body and brain with every passing hour of the day, this routine is my way of taking control. I might feel knocked down again and again, but I need to at least start standing up. 

It'd be a big stretch to say the cold provides pain relief, but some days I do feel like it can give me a little extra breathing room.  

• Neurology check-in: At the end of the year, Craig and I hopped on a phone call with my long-time neurologist from the Mayo Clinic, Dr. Dodick. Even though I haven't had any real success with some of the more conventional migraine protocols, we're grateful to have had Dr. Dodick in our corner through the years. He's one of the leading headache and migraine researchers in the world, on the bleeding edge of innovation that is shaping the landscape of migraine treatment. I know this is the case in many other areas of medicine too, but I find it quite remarkable how many treatment options have emerged just in the last eight years I've been under his care. 

From the noninvasive wearable or handheld modalities I've tried like the Cefaly, vagal nerve stimulator, and transcranial magnetic stimulator, to calcitonin gene-related peptide (CGRP)-blocking antibodies, the technology has come so far. And when you live in unresponsive chronic pain like I do, constantly toeing the line between utter hopelessness and cautious optimism, that's the stuff that gives you real, tangible hope. Because Dr. Dodick is on the frontline of this research, helping to get these treatments FDA-approved and accessible to patients like me, he's been able to share updates with me and Craig in real time too. Anecdotal information like "this device is so far just approved for the use of cluster  headaches ... BUT we've been seeing that it's also helping chronic daily headache so it might be worth it for you to try..." (as an example).  

So a few interesting takeaways shared on this recent call:  

We chatted with Dr. Dodick about the vestibular component of my pain. "Dizziness" has never been a primary complaint for me (I'm lucky that I don't deal with debilitating vertigo, as that is a beast on its own. But, as discussed in my last post (and the reason I was trying the Z Health rehab), there is obviously a reason I get dizzy when turning my head left to right more than two or three times. He agreed this stems from my original injury. Hitting that tree was a vestibular insult, leaving my system highly vulnerable to equilibrium changes. It therefore makes perfect sense that changes in visual input (via the vestibulo ocular pathway) and input from the neck (via the vestibulospinal tract pathway) can still have a profound effect on my symptoms.  

We asked Dr. Dodick what he thought of the red spots that sometimes develop on particular "spiked" pain days. (See photo below). His take was that the blotchiness was likely indicative of reflex sympathetic dystrophy, or more commonly referred to as complex regional pain syndrome (CRPS). Basically, this is autonomic nervous dysfunction (no surprise there). When you sustain an injury, your sympathetic nervous system tells your blood vessels to constrict to prevent blood loss and then later, to open back up so that the damaged tissue can be repaired. But with CRPS, your poor sympathetic nervous system gets mixed signals. Even though the injury is over and done with, that message is never received. It's the reason why amputees can experience phantom limb pain. It's almost unbelievable, but it's a horribly real thing. (Pain happens in your BRAIN, so you can still feel pain in your left leg even if you've lost your left leg). CRPS is treated with pain relievers, anti-inflammatories, anti-depressants, steroidal injections, even intravenous ketamine infusions. And those are all things I've already done, so it doesn't really change a whole lot for me. Just interesting. 

 

On the modality front, Dr. Dodick recommended I try a new remote electrical neuromodulation device called Nerivio, which recently gained FDA approval for the acute treatment of episodic or chronic migraine. My pain is 24-7, which makes it hard to treat in acute manner (think taking an abortive drug when you feel a migraine "coming on") but Dr. Dodick thought (and we agreed) that it couldn't hurt to try. The Nerivio works by engaging a descending pain inhibition network in the body. It's just an arm band that feels kind of like a tens unit and you control the intensity from an app on your phone. So I gave that a shot but didn't experience any relief. 

We revisited a conversation we've been having over the last couple of years around calcitonin gene-related peptide (CGRP)-blocking antibodies too. As I mentioned before, these therapies are already considered transformative in this field of medicine, and it's early days still. Monoclonol antibodies are designed to target a single protein or receptor that's responsible for transmitting pain signals during a migraine. When they enter into the body, they break down into their amino acids. Unlike other drugs, they don't get metabolized by the liver, they don't attach to other proteins, and they don't target other stuff along the way, which means that the side effects (especially compared to traditional migraine meds) are so minimal. 

If you've been here for a while, you know I'm not your run of the mill migraine migraine patient, so as exciting as some of these breakthroughs are, they don't always mean a whole lot for me. But Dr. Dodick explained that CGRP trials are now underway for acute, subacute, and chronic post-traumatic headache (hey that is me!). The only reason we haven't gone down this path before is that in the time since they've gained approval and come to market, I've been undergoing fertility treatment, and then have been pregnant, and am now still breastfeeding - all of which are contraindicated. As soon as that's not the case, I'll most certainly be starting. Dr. Dodick has recommended an IV version, as bioavailability is 100% whereas the self-administered monthly shots are only about 50%. 

We also discussed some additional research he's been doing with post-concussion syndrome. He recommended I try supplementing with N-acetylcysteine (NAC) ( 600mg 1-2/day), which I've been on now for a couple of months. NAC is a precursor molecule to our body's main antioxidant, glutathione. It's been studied in traumatic brain injury patients for its neuroprotective and mitrochondrial boosting benefits. 

Along the same lines, we talked about the potential therapeutic benefit of nictotinamide riboside, a precursor to NAD+. If you're not familiar, NAD+ (which stands for nicotinamide adenine dinucleotide) is a coenzyme of vitamin B3 (niacin). It's naturally present in every cell in your body and its main role is the transfer of electrons from one molecule to another. Simply put, it's what FUELS metabolic reactions, driving your cells to metabolize carbohydrates, fats, and amino acids for energy. Thorne makes a product called ReveraCel that combines nictotinamide riboside with a few other things so he recommended I try that too (which I also have been now for a couple of months).

It's clearly advantageous to boost NAD+ (Dr. Dodick is even working with Thorne to develop a product containing both nictotinamide riboside and NAD to help treat post-concussion syndrome) so we asked about NAD+ infusions. NAD+ is currently used therapeutically to treat a host of different age-related, inflammatory, autoimmune, and neurologic conditions. It's even used in addiction recovery because of its ability to aid in the regeneration of opiate receptors, which is pretty fascinating. It's most beneficial when administered intravenously, sending a high dose of the compound directly into the bloodstream. He wasn't aware of any research with this kind of chronic pain, specifically, but agreed it wouldn't hurt for me to try. If mitochondria make energy and NAD+ can optimize the function of my mitochondria, seems worthwhile in my book. So I'll be going to my naturopath for my first 90 minute infusion on Thursday. The plan is to do at least three.

• Shockwave Therapy  

As time has gone on, it can feel increasingly difficult for me to start working with new practitioners. It's overwhelming to start from square one, and honestly just hard for me to even find clinicians who offer something more or different than what I've already tried over and over and over again, But when I was referred by a friend and highly respected expert in the field to Shawn Robeck, DC at Fix Body Group I knew it was worth a fair shot. We started working together with a focus on just restoring some function back to my cervical spine. Along with manual work and a few other modalities I've been treated with in the past (like ARP wave and traction), he started using a tool that was new to me: Shockwave. This is what the unit looks like below. It's essentially a wand that uses a mechanical pressure wave, which is transferred to the body by an applicator head and which radiates outs in the tissue. That mechanical stress triggers reactions in the tissue that should promote healing. If you're familiar with the mechanism of prolotherapy or platelet-rich plasma therapy, it's very similar. You create trauma in a specific area to force the the body into healing. Shockwave therapy is NOT comfortable, especially in certain areas like the ridge between my occipital and parietal bones, where we've focused on breaking up adhesions. It kind of feels like someone is drilling into your skull. But it's also a good kind of pain, as only someone in chronic pain can understand. 

 

In the first few weeks working with Shawn, it seemed like I was actually experiencing some shifts in my pain, along with improved mobility in my c-spine. In fact, I even had a week in late January (and ENTIRE WEEK) of lower-than-normal head pain. It may not seem significant, but that was f-ing remarkable. That relief has been difficult to replicate, which is incredibly frustrating, but we're keeping at it for now. 

• Red Light Therapy

One of the perks of Craig's career is that he himself is highly knowledgeable in a lot of these less conventional therapies, or well connected to those who are. So recently we were connected with a company called LightStim, whose products combine therapeutic light energy with patented technology to aid in the body's natural recovery process. In the same way that plants absorb light energy from the sun, these devices deliver different wavelengths of light energy to help increase local blood circulation and relieve pain. We have this bed at our house right now, which I'm trying for a couple of months. I go on it every day for 40 minutes (20 front and 20 back). I haven't noticed any changes as of yet, but will report back. 

Phew. That was a lot, but I think that about covers it for now. I try so hard to stay positive. It's easier said than done but I know that ultimately, the quality of my own life will depend as much on how hopeful I chose to be as it does a number on the pain scale.

I was listening recently to some parenting podcast all about teaching kids resilience skills. "Resilience" is kind of one of those buzzwords that gets tossed around, but there was this one line about what it is and what it isn't that struck me. Basically that resilience isn't the ability to persevere through challenge but the ability to take stress and pain and to use it to your advantage; to grow from it in a purposeful way. They talked about how resilient people are good at finding pause to problem solve. This was all in the context of raising good humans, of course, but at the very least, this will be what Ryan can learn from her mama. (I can only hope that my chronic pain lens will help me be a better parent as much as being a parent has helped me live in chronic pain).